Ugh! Today was all kinds of awful. Skyler is starting to have drug with drawls that have made him so sick. He has been doing so well lately that they started weening him down on the sedation and pain medicine, but it has all of a sudden hit him hard. He has been so agitated and just clawing all over his face because he is so itchy. He has lots of diarrhea and also threw up tons. Thank goodness he didn't aspirate any of it though. I have never seen him in so much pain.
Also today every time they suction him his O2 would drop low. On one of his spontaneous breathing treatments today (where he breathes on his own) he started panicking and his oxygen dropped into the low 70's. The nurse even had to bag him to get his oxygen up, which has never happened before. They did a chest x-ray to see if part of his lung collapsed but it didn't show anything new so we are kinda at a loss as to whats going on. So they upped his vent settings again and we will see what happens.
At one point today Sky was so agitated we decided to turn him on the other side and see if that helped and we found that he was laying in a pool of blood. For some odd reason the skin on his neck tore and he started bleeding like crazy from it! At first it looked like it was coming from his mouth so to say I freaked out is an understatement. His platelets were low at the time so that made it bleed even more. The nurse had to hold direct pressure on it for like twenty minutes to get it to stop bleeding.
Right now they have to change the tape that's holding his breathing tube in because it got throw up and blood on it, but since he has been so agitated and kinda pulling at the tube today they are going to paralyze him for it. To me I think that's complete torture. I hate it!! For all we know he could be laying there aware of whats going on and he cant move his body. That must be awful and I cant stand it! I'm writing this outside of his room right now because I just cant sit by and watch that happen to him. I just want to hold him tight and tell him everything is going to be ok. I cant do that though and honestly I dont know if everything is going to be ok.
So today was pretty awful and I'm not sure what to make of it. Is he getting worse again? Is this just a tiny setback? I just wish someone could tell me exactly whats going to happen. I swear there is no worse torture than to watch your child suffer and know that there is nothing you can do to make it better.
20 comments:
O my gosh, that is horrible! I don't know what to say to make you feel better,except that there is a whole group of people over in Australia rooting for this kid and we hope it makes it! Hang in there--you are an amazing person!
Oh Crystal. I am so sorry. You and Skyler have put up such a strong fight..and I am sorry you are having to do it. My heart is aching for you. You are an amazing mother and I KNOW Skyler can feel your love in that room because I can feel it through your posts. I love you, I am praying... always praying for you both!
I'm so sorry. I wish he could be pain free and on the mend again! I'm praying for the both of you. I can't imagine what you're going through and how hard it is for little super Skyler. Sending tons of prayers and thoughts your way. Stay strong!
I have been following your blog after running across it randomly. My son doesnt have cancer. Nothing even close. But PCMC was like a second home to us for so long. I dream of those nights that I wake up and see them bagging him and I panic. I am so sorry that the cancer has gotten him SOOOO sick. Cancer sucks. We put his name on the prayer roll at the temple last weekend and hope that it all turns out well and that you have peace while you stay strong for the sweetest Skyler!
Crystal I can totally understand wanting to know what is going to happen. I was just talking about this. It has been heavy on my mind with Maggie because I have no idea what to expect with her. We are not in the hospital right now because they do not know what else to do for her but she is still struggling and currently has a yellow color to her skin among other things. This is not good. Anyway my point is that I think its one of the worst things in the world to sit and anticipate the future of your sick child. Its nearly impossible to do. I'm sorry that you have to go through all of this. I honestly think of you both and pray for you both everyday.
Keep holding on. Know that you are loved and prayed for by so many. So many people are rooting for you both!!
I'm so, so sorry! What an awful exhausting day for you both. The unknown is so scary. I agree that helplessly watching your child suffer and worrying about them not knowing how things will turn out are the worst things you can experience as a parent. I wish there was something I could say to give you comfort... my heart is also aching for you.
I'm just at a complete loss of what to say... Just know that we are thinking about you lots and we'll be praying for you guys!
I cant even imagine what you are going through! That must be awful! I am so so so sorry! Stay strong and know that you both are loved and thought of so much much! Prayers are being sent to heaven for you both!
Crystal, I am so sorry. It's frustrating to me right now watching Millie and it's NOTHING to what you and Sky are going through. I think the unknown is the worst part and it must be so frustrating to watch him struggle with his breathing when his lungs are looking good. I would have FREAKED out if I saw all that blood, I am so sorry that happened to you and to Sky. It must have been really scary. I love you and I love Sky. Hang in there! You can do this! You and Skyler are both Super Heroes.
Love,
Amanda and Millie
Thinking of you and Skyler! Praying for you both!
Crystal - so sorry that Skyler has had a bad day, but praise God he is hanging in there! Keep the faith my friend. keep your eyes on Jesus and just rest in His unfailing love.
THe button for your blog is ready - just email me!!
bethherring62@ymail.com
If you decided you didn't want to put it on your blog, just let me know...
The very little experience that I've had with Isaac at PCMC was torture enough. I think of you guys every day, and hope that you, dear Crystal, are getting the care and rest that you need. My prayers are always with you and Skyler. I hope you can feel them.
Oh Crystal...even though you probably don't feel strong right now, YOU ARE AN AMAZINGLY STRONG WOMAN and MOM. YOU CAN DO IT! Skyler is counting on you! Take each day one moment at a time..because sometimes that's all the strength that you can muster. There is nothing in the world worse than seeing your child in pain and not being able to do anything to be able to relieve it.
Just know that Skyler loves you and so do so many people out here. Hugs
I really have no words. I am just so, so sorry. I really don't know how you do it up there everyday, you are an amazing mom and Skyler is an amazing boy. I will pray that tomorrow is a much better day for you both. I wish there was more that I could do.
Praying for you guys. Just sent a Superman card to Skyler. There's no way around it, no easy way through it. I've been there, lost two little ones, though not as old as Skyler. So sorry. My heart goes out to you.
Eric
just noticed that the card I sent has the same picture as the background of your blog. Ha!
Eric
O am so sad to hear this day was so difficult for the both of you! I can not imagine being in your shoes, but I do know that Skyler can feel all of your love, which is the exact thing that he needs! You both are so loved and are in my prayers! Take care of yourself too! You are an amazing and strong mom for Skyler! Hang in there! I wish I could reach out and give you a hug! My thoughts and prayers are with you guys!
I just started following your blog.
I look at what you've been through and what a courages woman you are. I look up to you for the example you are to others of your faith in the Savior. Keep up the good work don't give up hope.
a mutual friend directed me to your blog and i'm so grateful she did. what an amazing mommy you are! Skyler is such a handsome guy! We hope and pray for the best for you both! I'm so sorry you're going through such an incredibly hard trial. Sounds like you are surrounded by family and friends who love and pray for you as well. Thanks for continually updating on his progress- prayers are answered.
Dear little Skyler, PLEASE get better! We are so sad to see you in so much pain. We are praying for you!
Dear Crystal, I can't even imagine how hard this must be for you. You are a beautiful person and you are capable of so much. We are praying for you too!
-Jill Hughes and Family
I can hardly bear to read about what Skyler is going through, I can't imagine being the one sitting there witnessing all of this. Crystal, I will continue to pray for your little man and for you to hold up through all of this. I'm just so sorry he has to go through this, it isn't right. It just isn't right.
I am glad things have gotten a bit better since this post.
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